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The Italian National Health Service has over 214 thousand regular inpatient beds, of which 20.5% are in accredited private facilities. There are 12,027 spots for day hospital care, nearly all of which are public (88.6%), and 8,132 spots for day surgery, predominantly public (76.7%).
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The national PHR
History
From a normative perspective, the FSE has been introduced from art. 12 of law decret 18 Oct 2012 n. 179 ( “decreto crescita”, converted into law 17 Dec 2012, n. 221). Nevertheless, even before this instrument got national significance, some Regions already started projects to realise local FSEs (e.g. Emilia Romagna region).
The law established that:
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It’s hard to define the features of the Italian FSE because, as discussed in the following paragraph, each regional FSE has different ones.
According to law (d.p.c.m. n. 178/2015), the FSE has to include a minimum amount of “compulsory/core” elements, which are: patient demographic, clinical reports (reports of specialists visits, test results, radiology), A&E reports, discharge letters, organ donations consent , patient summary and pharmaceutical dossier.
The pharmaceutical dossier is a section, which is updated by the pharmacies, that can then help tracking the pharmacological history of the patient, monitoring whether the new medications are appropriate, and whether the patient is adhering to therapies. This section is, at the moment, not completely developed.
The patient summary is a summary of the clinical profile of the patient - e.g. chronic conditions, transplants, adverse reactions to medications, allergies - , redacted by the GP (or paed). This should be a support especially for emergency situation, so that a clinician can easily get a summary of the patient’s condition. Looking at the data, we can see that this section has a use which is close to zero. (from Gazzetta ufficiale ) One of the reasons why this is not used is because redacting it is seen as time consuming, and requires change in the normal workflow. Moreover, the GPs don’t see any benefit in using it as the data of the patient’s summary are not for them but for other clinicians. This way, the GPs become responsible of medical decisions taken by others on the basis of the patient’s summary.
Then there are optional elements. Each region can decide which ones to have, for example:
a feature to let the patient add notes and clinical documents. This is an important promoter of patient self management and empowerment. It is argued that this should become a core element.
in-home assistance programmes,
care plans
medical certificates
Vaccinations
others
Recently, the “decreto rilancio” (2020), has set that the FSE has to integrate also with:
the Transplants Informative System ( Sistema Informativo Trapianti - SIT, a digital infrastructure for the management of data regarding the National Transplants Network).
the Italian Vaccine Registry
“CUPs” : regional centres for appointments management.
Source: “La digitalizzazione della sanità in Italia: uno sguardo al Fascicolo Sanitario Elettronico (anche alla luce del PNRR)” → “Healthcare digitalisation in Italy: looking at the FSE”
Weaknesses
In the last 2 decades, some Regions have started initiatives to realise platforms for the collection of clinical records produced by their healthcare institutions. The adoption of different processes, the development of different architectural and technological models and the different level of advancement of these projects, is the reason why, until now, interoperability hasn’t been reached. ( Ciampi, M., Esposito, A., & Sicuranza, M. Stato dell’arte sulle iniziative nazionali relative allo sviluppo di sistemi ICT interoperabili per la Salute Digitale.)
FSE is established by single regions: this is a model in which the architecture is based on a national net of regional architectures.
At the moment, the patient can access the FSE through the modalities established by the laws of their region, and can only have access to their data through the access point of their region. If the patient moves, they need to chance their access modality and they might find it difficult or impossible accessing their record (e.g. in the case of moving to a different Country). .
The law d.p.c.m. from 2015 establish that each Region has to implement the FSE through a technological infrastructure that is interoperable with all the other Regional FSE. This is because patients should be able to move from Region to Region without losing their data. In 2018 it was established the National infrastructure for interoperablity (INI), that should have signed the moving from a federal system to a centralised, national one. In the same year, a single point of access was going to be established (which should have been this), but this never happened.
At the moment, interoperability is not real in practice, because of:
heterogeneity of data
utilisation of different standards by different Regions
presence of different laws
The lacking of interoperability of regional systems, that doesn’t safeguard the health of the patients, diminish the usefulness and the efficacy of the FSE.” 26 Jan, 2023(Carlo De Masi, president of the national’s Consumers protection association).”
New architecture:
In black, what is already existing, in grey, the hypothesis of intervention. This shows that there are regional registries, and a platform for interoperability. However, there’s no central data repository, no national registry, no structured data (which ideally should be in FHIR format), making the interoperability platform useless.
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( Linee giuda per l’attuazione del FSE (Gazzetta Ufficiale della repubblica Italiana 11-07-2022))
Published outcomes - statistics
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